Each day with a terminal illness is a choice. Will I be positive today or will I let the emotions way me down? Will I look at the glass as half full or half empty? Will I choose to smile or choose to cry? To be completely honest, the last few months have been 50-50. I've been very frustrated by all the things I CAN'T do and have let myself focus more on those, instead of what I CAN do.
For example, we had a birthday play date with a great friend of Alex's (and mine) at a local "jumpy" place. Alex LOVES these places because of how hyper he is. However, lately I just can't find the breath to expel that kind of energy. And it bothers him, which then upsets me. The day after the get together, he said that his friend's mom loves her more because she jumped with her. I tried explaining to him that five minutes of me exercising is about equal to him running around for an hour. I get that out of breath. This seemed to appease him. But of course, it stuck with me longer. It pissed me off (scuse my French) that I couldn't play with my own son. That I couldn't be silly with him. That I couldn't build those memories with him.
Then I had to remind myself that at least I was still there. I was at the party with him and our friends. That I got to see him having fun, that I got to take pictures of him/with him. Was it perfect? No. Was it exactly how I would wish? No? Was I sitting on the bench feeling a bit lost because I wanted to be on the inflatables? Yes! But I was there. 3 1/2 years after being diagnosed, I am still here. My health has declined and the disease continues to effect me in more ways each month but at the end of the day, I'm still here. And that is where my focus needs to stay.
But with me reminding myself that I'm still here, the devil's advocate in me asks "what if there comes a day when I'm not?" Now that he's 6 1/2, I know he would remember me. We have a gazillion pictures together so he would have those to look at. We spend a TON of time together, so those memories would stay in his head. I feel like he's already picked up a lot of my personality (good and bad) so I know I would live on within him.
But still I ask myself, "have I put enough people in his life that would be around after I was gone" (God forbid that happens)? Of course he has a wonderful, amazing, attentive, fun, caring, loving father. He has a great set of grandparents who think the world of him. He has a great aunt, uncle and cousins, and even though they live out of state, I know they completely adore him.
But what about our social network and our friends? As this disease has progressed, I have tried to focus on the people who I could see sticking around. I've always been a VERY social person, but I have changed my mentality from "the more friends the better" to "quality over quantity".
There's my great friend of over 11 years who is more like a sister and therefore an aunt to Alex. It confuses the heck out of him because he wants to know when she and Matt were brother and sister. :-) Even though we are NOT blood, she's seen me at my worst, been there with me when we tried so hard to have Alex and held my hand when I cried more times than I can count.
There's the friends we've made over the last couple years who have also become more like family. They are part of our lives because we all have fun together and can get along when we travel together and our kids enjoy playing together. But also because they raise their children pretty much the same way we raise Alex. And I know, if I weren't around, they would continue to be there to help Matt. I know that they love my son almost as much as I love him.
There are some new friends that we've met through Alex's class who have become an important part of our support system. Even though they are new to our lives, I believe that they already care enough to stick around. And given that they have boys Alex's age, I know that would help give him some stability.
Then there are friends from church who have watched Alex grow up over the last 3 years. They seem to have his GENUINE interest at heart and would help raise him up with God at the forefront - something that is VERY important to me.
But I'm left wondering - have I done enough? Would he feel enough love? Would his life still be complete and fun? Would he have enough friends to play with? Enough people in his life that would watch out for him as he grows? Would Matt have enough help? Would he let these people from our inner circle assist with shaping our son?
And as I get to the end of this blog, I have to believe the answer is yes. I have to believe that our bonds with family and friends are strong enough that Matt and Alex wouldn't be alone. That they wouldn't FEEL alone. That there would still be fun play dates and vacations and camping and baseball and kids playing at our house. I have to believe that our community of faith would continue to help raise Alex in the church.
I have to believe that I've done enough. That the people in our lives would still be here in case I wasn't. And to those people, I say "thank you". Thank you for giving me that sense of peace. Thank you for loving us all enough. Thank you for caring enough. Thank you for just being you.
God bless each and every one of you. Because without everyone here, I know I would let the "glass half empty" days overwhelm me much more than they do. Thank you for your support - not just of me but of my two guys. Even though I'm the one who is sick, I think they actually need you all the most. And I just want to make sure they are ALWAYS taken care of. Hope everyone has a great day! :-)
